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Living With Love, Chaos and Haley

"The first time we took Haley to the hospital, I guess I expected that they would put it all back together. But it's never all back together," said Christine Abaspour, Haley's mother.Credit
Nicole Bengiveno/The New York Times

PLYMOUTH, Mass. — When Haley Abaspour started seeing things that were not there — bugs and mice crawling on her parents’ bed, imaginary friends sitting next to her on the couch, dead people at a church that housed her preschool — her parents were unsure what to think. After all, she was a little girl.

“I thought for a long time, ‘She’s just gifted,’ ” said her father, Bejan Abaspour. “ ‘This is good. Don’t worry about it.’ ”

But as Haley got older, things got worse. She developed tics — dolphin squeaks, throat-clearing, clenching her face and body as if moving her bowels. She heard voices, banging, cymbals in her head. She became anxiety-ridden over run-of-the-mill things: ambulance sirens, train rides. Her mood switched suddenly from excitedly chatty to inconsolably distraught.

“It’s like watching ‘The Sound of Music’ and ‘The Exorcist’ all at the same time,” Mr. Abaspour said.

For her family, life with Haley, now 10, has been a turbulent stream of symptoms, diagnoses, medications, unrealized expectations. Diagnosed as a combination of bipolar disorder with psychotic features, obsessive-compulsive disorder, generalized anxiety disorder and Tourette’s syndrome, her illness dominates every moment, every relationship, every decision.

“The first time we took Haley to the hospital, I guess I expected that they would put it all back together,” said her mother, Christine Abaspour. “But it’s never all back together.”

At least six million American children have difficulties that are diagnosed as serious mental disorders, according to government surveys — a number that has tripled since the early 1990’s. Most are treated with psychiatric medications and therapy. The children sometimes attend special schools.

But while these measures can help, they often do not help enough, and the families of such children are left on their own to sort through a cacophony of conflicting advice.

The illness, and sometimes the treatment, can strain marriages, jobs, finances. Parents must monitor medications, navigate therapy sessions, arrange special school services. Some families must switch neighborhoods or schools to escape unhealthy situations or to find support and services. Some keep friends and relatives away.

“It kind of ricochets to other family members,” said Dr. Robert L. Hendren, president-elect of the American Academy of Child and Adolescent Psychiatry. “I see so many parents who just hurt badly for their children and then, in a sense, start hurting for themselves.”

Ms. Abaspour, 39, struggles to master the details of Haley’s illness, to answer her obsessive questions, to keep her occupied. Mr. Abaspour, 50, who long believed that “Haley was going to grow out of it,” has been gripped by anxious thoughts and intrusive images that rattle him to tears on the hourlong commute to his job as an anesthesia engineer at a Boston hospital. He imagines people being crushed by trucks, someone hurting Haley, his own death.

Haley’s sister, Megan, 13, has been so focused on Haley and determined not to add to her family’s burden that in June, after a quarrel with her parents, she tied a T-shirt around her neck in a suicidal gesture.

“I feel like she gets all the problems and I feel like I have to take some of that off of her,” Megan said. “It’s really difficult a lot to try to stay away from babying her and helping her. I try to stay still but it just hurts, it hurts inside.”

Haley, with her shy smile and obsidian eyes, is increasingly aware of her own problems, although she cannot always express exactly what is going on inside. “My mind says I need some help” is the way she explained it recently.

Her illness has caused great financial strain; although the Abaspours have health insurance, they have been forced to draw on their savings and lean heavily on their credit cards for living expenses. Still, they have bought a trailer in a New Hampshire campground because there Haley finds occasional solace, and relatives nearby understand the family’s ordeal.

The family wrestles with deciding whom to tell about Haley’s illness, and what to say. Her worst symptoms are most visible at home and less apparent at the public school and the state-financed therapeutic after-school program she attends. Her parents say she works hard to hold herself together during the day and then later, feeling more comfortable with her family, falls apart.

This disparity in behavior is not uncommon, said Dr. Joseph A. Jackson IV, Haley’s psychiatrist, and “parents often get the brunt.”

Because of the contrast in Haley’s public and private behavior, her parents are wary of telling people that she is mentally ill, as they might not notice.

“I don’t want anybody to pity her,” Mr. Abaspour said. But they also get frustrated when teachers or relatives play down the seriousness of Haley’s illness, or conclude that she is being manipulative or that another child-rearing approach would help.

In the middle of last year, for example, a teacher did not understand Haley’s need to leave the classroom to quiet the voices or relieve anxiety. Haley grew so frustrated that she “would sit there in her chair and cry,” her father said. The parents pressed school officials to switch her to another class.

“We’re sick and tired of trying to prove it to people,” Ms. Abaspour said.

Her husband added, “Everybody thinks they have the solution. When Joe Schmo comes over for a drink, he says, ‘Try this, this will work.’ No, it won’t.”

Visions and Voices

From birth, it was clear that “I was dealing with something different,” Ms. Abaspour said. Displaying a photo album with picture after picture of Megan all smiles and Haley “crying, crying, crying,” she added, “We just thought we had a very difficult child.”

Yet exactly what was wrong puzzled them for years, and even now, Ms. Abaspour said, “Every day it’s something new, I swear.”

While increasing awareness of childhood mental illness has helped many children and families, it can also create a misimpression that everything can be treated, said Dr. Glen R. Elliott, chief psychiatrist at the Children’s Health Council, a community mental health service in Palo Alto, Calif., and the author of “Medicating Young Minds: How to Know if Psychiatric Drugs Will Help or Hurt Your Child.” That can make families with complex cases feel “either genuine confusion or pretend certainty,” Dr. Elliott said.

The Abaspours decided to speak with a reporter about Haley’s illness and its impact on their family because they hoped it would help other families and make society more hospitable for children like their daughter. Talking about it was sometimes emotional, especially for Mr. Abaspour, whose eyes often clouded with tears. But they also said they found it useful to articulate their feelings.

When Haley was 3 or 4, a pediatrician blamed tonsillitis-induced sleep apnea, predicting that after her tonsils were removed, “ ‘you’ll see a totally different child,’ ” Ms. Abaspour recalled.

“We thought, ‘This is what is wrong with our child. This is our answer,’ ” she said. Preschool teachers suggested a learning disability. Later, Haley repeated first grade. The Abaspours consulted therapists about the visions of friends in the liner of the family’s pool and riding with Haley on her bike, and the voices criticizing her or telling her to touch a certain table. When a neurologist ruled out medical causes like Lyme disease, Ms. Abaspour recalled, her husband said, “I think we should just give her a placebo — it’s all in her head.”

They got a cat, “though we weren’t cat people,” Ms. Abaspour said. Then they got another because the first was “not the type of cat that Haley could throw over her shoulder and squeeze.”

New symptoms kept emerging. For a while, when she was about 7, the voices “were telling her she was a boy,” Ms. Abaspour said. “She had to constantly prove to them that she wasn’t.”

Haley became obsessed with penises, which she called “bums.” She claimed to see them though she was looking at fully clothed men and boys, her mother said. “Then she felt guilty. She would come up to me and whisper, ‘I saw his bum, I saw his bum.’ The bus driver or the little boy, anyone. It was constant.”

To halt the whispering, Ms. Abaspour suggested that they share a private signal: Haley could flash a thumbs-up after a sighting. Haley also seemed preoccupied with death, and on a highway would say that voices told her, “If that license plate didn’t say such and such, she was going to die,” her mother said.

When she was almost 8, Haley visited Dr. Jackson at his office at the Cambridge Health Alliance. He was struck by the results of a screening: Haley met full criteria for virtually every mental disorder listed.

Dr. Jackson wondered if the voices and the friends, which Haley told him were “nowhere but everywhere,” were schizophrenic-like hallucinations or milder thought distortions.

He also saw Haley’s mood swing from anxiety about a “disturbing dream in which her mother was killed” to euphoria, as she gleefully drew a large, brightly colored butterfly and a self-portrait with a too-big smile and a skirt that ballooned as if she were floating. The pictures, he said, “scream” manic sensibility, suggesting bipolar disorder.

Dr. Jackson prescribed an antipsychotic, Risperdal, one of a dozen drugs Haley would try. Some helped initially, but the voices returned or side effects developed.

Huge pills or bad-tasting liquid made Haley gag or throw fits.

“It was horrible, horrible, horrible,” her mother said, “and she’d pull us into it because we had to make her take it.”

Lithium caused weight gain: clothes that fit her one day no longer did the next.

When Haley was 81/2, Mr. Abaspour said, “Let’s drop all of these medications and see what happens.” He said, “I wanted to see her true self.”

The results chastened them. “You see her fine one day,” Mr. Abaspour said. “The second day comes and she’s fine and you say, ‘You see, honey, there’s nothing wrong with her.’ Then it’s the third day and she goes crazy and you feel like an idiot.”

When Mr. Abaspour returned and saw Haley “like a zombie” in a hospital full of out-of-control children, his first reaction was, “She can’t be in here.”

But the eight-day hospital stay made him grasp the severity of her illness.

“You look at an X-ray and you say it’s a fracture,” he said. “But this thing. ... Before then, there wasn’t solid evidence.”

A year later, school halls “would get scary because the voices would get louder,” so Haley constantly visited the school’s nurse and psychologist, her mother said. “She was going out of her mind.”

Haley was hospitalized again, and another antipsychotic drug, Abilify, muffled the voices.

“I remember thinking, ‘Am I supposed to be happy about this?,’ ” Ms. Abaspour said. She was grateful that something helped but distressed at the suggestion that Haley was psychotic. The Abilify has not soothed Haley’s anxiety or stopped her outbursts. And despite increases in the dosage, back are the voices (four boys and a girl), the tics (eye squinting and hand clenching) and the “bums.”

Dr. Jackson, her psychiatrist, said Haley’s biggest asset was her “very caring family” that was “seeking ways to shore themselves up” to better help her.

Ms. Abaspour said: “We ask ourselves sometimes, ‘Why? Why did it happen to us?’ Other times we see a child bald, going through chemotherapy. That’s the thing about this — it’s on the inside, you can’t see it.”

Megan’s Heartache

I pretend no one is around me when my sister is there.

I feel a constant hurt inside.

I touch a rainbow of joyfulness in my mind when my sister and I are FINALLY having a fun laugh together.

Told to do dishes before calling a friend, Megan felt that the chore should be Haley’s and stormed to her room. When her father said it was Megan’s responsibility, “I really got mad and slammed the door,” she recalled. “He came and ripped my phone right out of the wall.”

That was unusual for Mr. Abaspour, usually gentle or quietly humorous.

“I tried not to say something that would hurt her,” he said. “And definitely not to touch her. So I took it out on the phone.”

Megan said her reaction was, “Why should I live?”

“I took a T-shirt and I put it around my neck,” she said. “Then I said, ‘No I shouldn’t do this. I want to live but I don’t know another way out.’ ”

Siblings of mentally ill children often have such feelings, experts said.

Ten days of treatment helped Megan understand that “I felt pretty much like I was another mom for Haley,” she said.

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The Abaspours, who always gave Megan positive attention, were stunned. But Ms. Abaspour said she might have unconsciously been relieved that Megan could get Haley to laugh, or in other ways “take a little attention off me.”

For Megan, a doctor prescribed Prozac, but she became edgy and the suicidal thoughts continued.

“When I’m doing dishes and I see a knife there, my mind’s like, ‘Pick up the knife and kill yourself,’ ” Megan said. “I kind of just think, ‘Would things be easier without me?’ ”

Now she has stopped taking medication and is seeing a psychiatrist. Her parents are encouraging her to focus more on herself. She realizes, she said, “I’m important.”

Still, trying not to help Haley is hard. “I don’t really feel the pain that she feels,” Megan said, “but I feel that I should to make it even between us.”

Haley’s mother calls it “the ongoing search” — Haley’s obsessive quest for novelty and for objects to hold or to stroke over her touch-sensitive skin.

“I need something to calm me down so I can learn how to end my frustration,” Haley said. “I just get, like, sometimes, mad. I need to, like, hold it or hug it or just play with it.”

She and her family search through stores, scavenge through her crawlspace storage area and her bedroom full of Beanie Babies, toy cars, dolls. Megan said she sometimes offered her own belongings for Haley, thinking, “if I get excited about it she’ll decide it’s the right thing.”

But, Ms. Abaspour said, “she’s never satisfied.” Because her parents sometimes brush the hair on her arm with a surgical brush from Mr. Abaspour’s hospital, the family’s therapist recently suggested getting a soft lambskin.

Haley fixated on buying one, always asking as if it were a new thought: “Oh my God, you know what just came to mind? If I get that animal fur...”

Megan found her a faux shearling vest to stroke instead, but Haley exploded.

“I wanted Megan to find something like that animal fur,” she wailed, convulsing and weeping.

Anguished as he watched her, Mr. Abaspour said: “This is the point of no return. She’ll scream and cry and kick. If the neighbors could hear, they would think we were abusing the kid.”

Haley refuses to be consoled or touched, all the while saying, “Please help me, please make it stop, please make it go away,” her mother said. The Abaspours look on helplessly or send her to another room.

Haley’s eruptions, often 20 minutes long, occur almost daily, especially in the evenings. They often begin with Haley revved up.

Before the lambskin incident, for example, she marched around, chatting giddily about camp: “Today, today, today, we, um, instead of two periods of the game thingies, they call it sessions, periods, each session or whatever, we went to the picnic tables and we all went to the picnic tables and it was really fun.”

“Did you follow the bouncing ball?” Ms. Abaspour asked her husband, who replied, “I don’t even see the ball, honey.”

Haley sighs, frowns and fidgets, eyes drooping before she falls apart. Sometimes she hyperventilates or crawls under a table. It always ends with crying, but sometimes she will start to laugh through her tears, becoming “all chipper again, like manic,” Mr. Abaspour said.

Adds Ms. Abaspour: Later, “she says, ‘I’m sorry, I’m sorry,’ apologizing for who she is.” Her father said: “It’s not like a hurt that you can kiss better. It comes from within, and she doesn’t know why, and you can’t do anything about it.”

A Mother’s Stoicism

Christine Abaspour, the youngest of four girls raised by a divorced mother, knew what she wanted early in life. At 19, she left Massachusetts, joined a sister in Florida and became a waitress. At 25, she met her husband-to-be, who was 11 years older. She was engaged in two weeks, married in nine months and a mother a year later.

“We both wanted to have children right away, like you wouldn’t believe,” she recalled.

Ms. Abaspour said that she had no regrets, and that Haley “was given to us for some reason, and I keep waiting for the day when I realize why.”

Still, the experience has tested her stamina, and she avoids capitulating to Haley’s whims and outbursts by imposing structure, consistency, even distance.

“I’m her mother,” Ms. Abaspour said. “I try to make it a better world for her, a more comfortable world. I stay very strong for her and very encouraging for her. If she comes out of a meltdown, I’ll say, ‘I knew that you could.’ I don’t make her feel totally hopeless. It doesn’t give me any satisfaction, though, because I still feel helpless. Unfortunately it just bites you in the face all day long.”

Ms. Abaspour’s stoic approach, which her husband appreciates but cannot always emulate, is “a good coping skill for parents,” Dr. Elliott, of the Children’s Health Council, said. “It’s what happens to a family system when you’ve got a source of chaos in the middle of it.”

After getting Haley ready for school, Ms. Abaspour feels she has already lived an entire day. In the afternoon, “Haley walks in the door and I just want to hold her and give her a big kiss like most kids,” Ms. Abaspour said. “Instead I get a frown and tears and ‘Ooh, I had such a stressful day.’ ”

She said that every evening, a distraught Haley will “say to me her same 12 questions: ‘What’s going to happen when I need to go to school and I can’t leave the classroom?’ or ‘What do I have to look forward to today?’ ”

By bedtime, Ms. Abaspour said, “your heart’s just breaking.”

To slake Haley’s thirst for “something to do,” Ms. Abaspour keeps her involved in activities outside of school. Otherwise, the family ends up stopping for ice cream or concocting other outings, because unstructured time allows Haley to focus on the voices and anxiety. “Staying home is not an option,” Ms. Abaspour said. “Honestly I could not keep her busy. Sometimes being around here on a Saturday or Sunday, it’s almost toxic. She has multiple episodes — it’s like living hell.”

Haley’s fears of noises, crowded streets and surprises force the Abaspours to forgo amusement parks, apple picking or other traditional family activities. When relatives visit “and you think it’s going to be relaxing and we’ll watch movies and eat popcorn — that doesn’t happen in this family,” Ms. Abaspour said.

But she found Haley a T-shirt to cut up and draw on, saying, “If I can get her to do that kind of chop, chop, chop, mark, mark, mark, it kind of brings her back.”

Ms. Abaspour said she had watched “everyone else in the family rush over to her, and I won’t become a part of that. I make her be responsible for her own feelings because I can’t be responsible for those. You still have to be a regular parent. Honestly, she has to learn to soothe herself.”

But Ms. Abaspour doggedly monitors Haley’s progress. This summer, she visited Haley at day camp and was dismayed that the child frequently declined to participate, asking for the nurse.

Sitting out the swim period one day, Haley, wearing a “Keep It Cool” T-shirt, listed her feelings on a worksheet: “stressed, axxouis, sick, shacky.”

At lunch, she mostly licked salt off pretzels. Asked to choose a word-card matching her emotions, she picked “overwhelmed.”

Ms. Abaspour worries that as Haley becomes a teenager, her poor social skills might get her “mixed up with the wrong kids” or lead her to use illegal drugs. So she arranges play dates, but if friends are unavailable “it’s the end of the world,” she said. If they are available, she said, Haley anxiously asks, “What do I say, Mommy?”

Ms. Abaspour was recently laid off from a medical assistant’s job. Her former co-workers understood her need to interrupt work to deal with Haley’s needs, she said, and “didn’t look at me and say, ‘Her child’s crazy.’ ” Now she fears she will not find an employer who is as tolerant, though the family needs the income. Haley’s illness, the Abaspours were dismayed to discover, does not qualify for disability assistance.

In August, Ms. Abaspour arranged an elaborate 50th-birthday surprise party for her husband. They were “not always on the same page” about Haley at first, she said, but their strong marriage helps her handle the strain.

So do bright spots, she said, like the day Haley “really kissed me.”

Still, she can get overwhelmed.

Sometimes she bolts awake at night, but she declines medication.

“I can’t climb in a shell and stay there forever,” she said, “although it seems like some days where I’d want to be.”

A Father’s Anxiety

As a young man, Bejan Abaspour worried, especially about family.

Twenty years ago, for example, when his sister’s son was born, “I pictured my nephew getting Super Glue in his eyes and I was calling my sister saying, ‘Make sure you keep Super Glue away from him.’ ”

But the worries were not that intense — until Haley’s illness. After that, the intrusive thoughts and images got worse, horrific scenes in which he imagines himself as bystander or thwarted rescuer. “I’ll be driving next to a semi tractor-trailer truck and all of a sudden I will picture someone getting crushed by the wheel,” he said. “It’s usually an older lady or a kid. You get them out from under the truck, but it doesn’t stop. I’m in the emergency room, trying to help. I’m at the funeral. Then very easily, the tears come.”

Mr. Abaspour said he sometimes pictured Haley “getting lost somewhere, or someone’s going to hurt her. I’m involved and trying to get the guy who did it to stop. Sometimes I kill him. Sometimes it doesn’t get that far.”

Other times, he said, he imagines his death, seeing his family “at the funeral home and I’m laying there. I try to see what’s going on at home, how Meggie’s reacting to my death, how Haley’s reacting, what Christine is going through.”

He rehashes things Haley has said, like wanting to “start over” or her question: “When I get really old, can I come back home? Will you be there?”

He wonders if his worrying laid genetic groundwork for Haley’s illness, “if I’m the cause of what Haley’s going through.”

Until recently, Mr. Abaspour, who also has trouble sleeping, told no one about his agonizing thoughts, not even his wife.

“I didn’t want to burden her,” he said. “I can handle it. So what if I’m driving to work and I cry? So what if I only sleep for four hours?”

But last spring, the family’s therapist noticed “I had certain problems,” he recalled. She encouraged him to tell his wife whenever he had disturbing thoughts. Mr. Abaspour said he hoped that confronting his own anxiety would help “get to the bottom of what Haley’s going through.”

He added, “It doesn’t matter for me, but for Haley.”

Families once kept illnesses like Haley’s quiet, afraid of being shunned or disparaged.

Public acceptance has grown, but some misperceptions and prejudice remain, and families feel conflicted: they want people to understand so the child can get appropriate help, but they also fear that Haley will be mocked or ostracized.

“If they keep it a secret then they’re bad parents,” Dr. Elliott said. “If they start spewing diagnoses, they’re subject to criticism because they’re not taking responsibility, just laying it on the illness. Or they’re social pariahs because there are some people who think that mental illness is contagious.”

Like other families, the Abaspours sometimes hesitate to publicly label their daughter mentally ill. But they also want people to know, and they get frustrated if people do not fully accept or understand it, or see her symptoms “as a manipulative thing, or they feel like they can fix it themselves, maybe by distracting her,” Ms. Abaspour said.

Her own family now understands and is very supportive, but it took some convincing, she said.

“My mother would say, ‘She’ll be fine, she’ll be fine, there’s nothing wrong with her,’ ” Ms. Abaspour said. “My sister says, ‘Well, she didn’t act like that when she was over here.’ ”

Mr. Abaspour has not told most of his family, who live in England, because they might worry excessively or not understand.

He told his sister, but “she was like I was when I first encountered the situation — disbelief or denial,” he said. His sister, he said, has not told her husband or her 20-year-old son, which created an odd atmosphere when they visited the Abaspours in August. “When Haley did have one of her little episodes, they were all like, ‘oh, oh,’ and they wondered why we weren’t running over to her,” Ms. Abaspour said. “I would like to talk to them more about it. If she had diabetes, they’d know she had diabetes.”

When, after reading a book for children with bipolar disorder, Haley said, “I can’t wait to go to school and tell everybody I’m bipolar,” the Abaspours were torn.

They discouraged her from announcing the diagnosis. But Haley did tell her classmates, “ ‘I have a lot of noise going on in my head and sometimes I feel anxious and sometimes I have to take a walk.’ ”

Some day, the Abaspours hope, Haley will have more effective drugs and better coping skills, and society will be more tolerant, so she can lead an independent life. But they have no illusions.

“This is not going away,” Ms. Abaspour said. Not for Haley or her family. “The overflow of what Haley has is what has made all of us what we are today.”